International Researchers Turn to Beach
Center Family Quality of Life Scale

By Mary Margaret Simpson, Editor, Beach Center on Disability

A psychometrically valid scale developed by the Beach Center on Disability to measure a family’s quality of life is making an impact on family research throughout the world.

	Family Interaction is one of the subscales in the Family Quality of Life Scale developed by researchers at the Beach Center on Disability.

In the last 12 months, the Beach Center has received more than 47 requests for permission to use the Beach Center Family Quality of Life (FQOL) Scale from researchers and practitioners interested in measuring how families who have a member with a disability view their quality of life. The Scale also has been translated into Spanish, Chinese, and Hindi. The Beach Center is even involved with an international working group on Family Quality of Life to engage in global studies to learn more about family quality of life for children with disabilities.

The Beach Center FQOL Scale is the result of a multi-phase effort to work collaboratively with families and service providers to carry out research and understand family quality of life from families’ perspectives. In fact, since 1999 Beach Center researchers have spearheaded an extensive research program that defines quality of life based on the whole family rather than just the individual, which is a more traditional view.

How It Was Developed
The FQOL Scale was developed through a series of focus groups with families (both with and without children with disabilities), service providers, and administrators, and individual interviews with parents and service providers who did not speak English as a first language. A draft measure was field-tested in several large national studies and in various settings.

The final FQOL Scale features 25 items in five subscales: Family Interaction, Parenting, Emotional Well-Being, Physical/Material Well-Being, and Disability-Related Support. People who complete the scale rate their belief in the importance of and satisfaction with such items as, “My family feels safe at home, work, school, and in our neighborhood,” or “My family gets medical care when needed.”

While the FQOL Scale is designed primarily as a research tool, it offers promising flexibility. KU and other universities have used the FQOL Scale as a conversation guide for students interviewing families. The Scale also has been used, in a modified form, to help early intervention practitioners interview parents to identify a family’s concerns and priorities to help develop an individualized family support plan. Beach Center researchers are using the FQOL Scale in a study to investigate whether implementation of self-determination funding has an impact on families. Beach Center researchers stress, however, that the FQOL Scale should NOT be used to determine or deny eligibility for services or as a clinical measure for diagnostic purposes.

The Bottom Line
Key findings have already emerged from research by the Beach Center and other researchers using the Beach Center FQOL Scale:

• The Scale correlates positively to how families rate the adequacy of services they receive and the quality of their family-professional partnerships.
• Mothers and fathers appear to perceive the concepts reflected in each subscale alike, so the FQOL Scale can be used with fathers and mothers alike.
• The Scale seems to be sensitive to intervention when used as a pre-and post-test measure.
• FQOL Scale results are significantly related to parents’ coping strategies in dealing with stress.

Researchers at the Beach Center are now studying whether families who have children without disabilities also perceive the concepts of family quality of life in a similar way as families of children with disabilities.

Eight articles have been published or are in press on the FQOL Scale. Most of these can be viewed on the Beach Center website at www.beachcenter.org.

Click on FQOL for more information on the Scale or to order a copy.

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